Guest blogs
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Community updates


• Read over some of our recent discussions and have your say!

• Upload a new profile picture and give your profile a personal touch.

• Get the latest information on issues relating to coronavirus.

Guest post: I have a confession to make...

JMRJMR Member Posts: 2 Listener
edited July 2017 in Guest blogs

I once uttered a sentence that is so offensive to disabled people, I can't believe it came out of my mouth.  

I said it soon after my twins, Thomas and Alice, were born in August 2003. They came early, nearly four months early and they weighed just a pound and a half each. The doctor said that they had a 20% chance of surviving and that if they did make it, there was a high chance that they would be disabled.  

During those first few days, everything that could go wrong did go wrong. Alice had four heart attacks on the first night of her life. The next day the south east of England suffered a power cut and the machines that were keeping our babies alive cut out. Then, on day three, we were asked if we wanted to have Thomas baptised because he was going to die within the next 20 minutes. 

The statistics seemed so overwhelmingly gloomy and the prospect of disability so terrifying, that I couldn't see how anything positive could possibly come from the situation. That's when I said it...

"I think I'd rather they died than they were disabled."

Just typing those words makes my skin crawl now that the twins are happy, bubbly severely disabled 12-year-olds. And I realise how deeply offensive that sentence is to anyone who has lost a child.  

I was young then and I hadn't yet had the wonderful experiences that I have had with my twins.

Like the time that Tommy and I ran in our local 10k together with 1,000 other runners - me in my trainers, him in his wheelchair - and he slapped the bums of other runners as we overtook them. Or the night when I tucked Alice into bed and she finally said, after ten years of trying, "I love you, Daddy". Or when Tommy got his powered wheelchair and realised that for the first time in his life he could disobey me and go exactly where he chose, rather than where I directed him.
 
There are two types of people in this world, those who get disability and those who don't. I have been both and I wish there were less people like my old me.

The old me was happy to support disabled people and full of admiration for people who dedicate their lives to caring for them. The old me was happy for my taxes to go to the most needy in our society. But the old me was also uncomfortable in the presence of disabled people, frightened of something embarrassing happening (even though it never did) and frightened of what a life like that must be like.

Mother and father in swimming pool with son and daughter

But that was then and this is now. 

I now see that despite the huge financial and emotional cost to our family and to society that these children of ours have brought something unique and wonderful into our lives and those who come into contact with them. It's not for nothing that kids like Thomas and Alice are called 'special'. So they can't walk or say complete sentences, but they smile and they laugh and they love, which is actually quite a lot when you think about it. They are better human beings than I could ever hope to be. I just wish I'd met them sooner.

My book, Two For Joy, was released today, 2 June 2016, priced £7.99.  

I'd love to hear what you think or just have a chat about your experiences on here. 

Replies

  • JenniferUJenniferU Member Posts: 124 Courageous
    edited June 2016
    Hi James,

    Thank you for sharing such an honest and personal experience with us all.

    Your twins are beautiful! I love the image of your son slapping all the runners bums as you went past! :)

    I was wondering if there's anything that you think may have helped the 'old you' view disability in a more positive way?

    Thanks
    Jen 
  • NoraRNoraR Member Posts: 12 Courageous
    edited June 2016
    I think this is a hugely brave feature to write @JMR and touches upon so many taboo subjects in our society. As a world we can only grow stronger by facing our fears, discussing taboos and seeking to truly understand each other. 

    I know this is a fear of many parents-to-be, and what lies behind that fear is what really interests me!
  • JMRJMR Member Posts: 2 Listener

    Thank you for the thumbs up, Nora.  The post won't be to everyone's tastes, because it's a bit close to the knuckle, but I'm glad you liked it. 

    To answer your question, Jen, it's been a slow burner.  I didn't love the twins at the start because I was so sure they were going to die - given the odds we were presented with and being a bloke and thinking too much with the head and not enough with the heart.  My priority at the start was Georgie and catching her when the twins died, as they surely would.  But as their survival became reality, the love grew, to the extent that by the time the diagnosis came over a year later, it was never even a consideration that the four of us were going to fight this battle together.  I made some big promises to the twins at the start and I am trying to keep them even now.

    James

  • SacredAutumn89SacredAutumn89 Member Posts: 1
    I am ashamed to admit that I also felt this way when my Son was born, but I do think it's a natural part of the grieving process.
    It takes a little while to come to terms with the fact that the child/ren you imagined having is/are not the one/s you got, and the one/s you got are going to require back-breaking care probably for the rest of their life/lives.
    It's much easier to consider the grieving process of losing a child than it is to consider a future of complete uncertainty and the unknown. Not knowing whether your child will survive or develop future difficulties or live with any sort of independence, or not knowing if you will ever be able to live any part of your life again (yes, I know it sounds over-dramatic but at the beginning, when you're confused and frightened, it's exactly that).
    I too struggled to bond with my Son as I didn't think he was going to make it and, as a result, I almost resented having to care for him (as I didn't see him as mine).
    I do think it's a natural process to go through.
    I couldn't imagine life without him now and wouldn't change it for the World.
  • mafalamafala Member Posts: 72 Listener
    i just wanted to say that I'm really looking forward to reading your book. 
  • Jackie_at_SNAPJackie_at_SNAP Member Posts: 1
    Hi JMR,
    We would love to feature your book in an upcoming SNAP newsletter.  We have a database of over 24,000 including parents, childcare and other professionals, case managers and solicitors. Please contact me [email protected]
  • OhboyoklahomaOhboyoklahoma Member Posts: 5 Listener
    Hey James! Boy do we all need a good dose of honesty. Very few people would not have had the thought that you did cross their minds but very few people would have admitted it.

    Why do people have this thought though? Maybe because society and government suggest that disability is the end of world? It's not but it is the end of the world as we know or expect it to be and that's some scary stuff! 

    Let's trumpet the fact that disability, although different, isn't the end of the world but the beginning of a new one. Nearly ten years ago, I became disabled through illness and the life I'd been living died. From the debris l fashioned a new one along with my husband who, by association, also had to build a new life. We learned that there's still good life to be had after disability, it's just that life looks nothing like we thought it would but that's not necessarily a bad thing. 

    Hope your book flies off the shelf and that you and yours are fabulous with a future so bright, you gotta wear shađes!  B)B)

    Take care. 
  • RosemaryRosemary Member Posts: 11 Listener
    Hello James  Thank you for writing this very honest blog, it must have been very difficult for you but I hope it helps other parents in a similar position. I have always had my impairment as I was born with Spina Bifida and as a result use a wheelchair. I am in my 40s now but I know from talking with my Mother that she at times felt it would have been better to let me die naturally as I had to have so many life-saving surgeries in the first few months of my life. My parents found it very difficult to watch me suffer, as any parent would. Through my work in the disability sector I have heard many parents talk about the awful way in which they are told about their children's impairment and the way this is dealt with by medical professionals.  My Mother was told not to get too attached to me as I was not going to survive very long! What a ridiculous thing to say to a woman hours after she has given birth. Sadly this sort of thing still goes on.  Your children are beautiful and no doubt they have enhanced your life.  We need to hear much more positive things about disabled people. More about our achievements, our day-to-day experiences and, crucially, what needs to happen to help us live better, more equal lives.  Thank you again for writing this piece.
  • Swift77Swift77 Member Posts: 4 Listener
    Amazing read coming from a disabled parent. My 10 month old is amazed with my prosthetic limbs and I hope it teaches her to be understanding of others especially when they are disabled.
  • ryanm1232ryanm1232 Member Posts: 1
    hey James how are you doing today from Ryan Mcpoland
Sign in or join us to comment.